The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices

Today, The Arc released the following statement in response to the Food and Drug Administration’s (FDA) announcement that it intends to ban the use of an electric shock device called Gradual Electronic Decelerator or GED. These devices are used with residents of the Judge Rotenberg Center (JRC), an institution in Massachusetts for children and adults with intellectual and developmental disabilities (I/DD) and mental health issues. The devices are worn by residents of JRC; staff members use remote controls to administer a shock to the resident wearing the device with the intent of changing the individual’s behavior. Substantial evidence exists in the FDA’s records that this practice is painful and traumatizing to the individuals who have been shocked.

“There is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. The actions of the JRC remain a civil rights issue. While we are glad that the FDA has shared its intent to ban use of these electric shock devices, we urge the agency to finalize this rule as soon as possible.

“With every day that passes without this rule being finalized, the rights of people with disabilities and mental health issues will continue be violated as they endure painful abuse. The Arc won’t rest until this barbaric practice is halted and use of these devices is banned at the JRC and nationwide. We remain a resource to FDA and other administration officials as they work through implementing this ban,” said Peter Berns, CEO of The Arc.

The Arc has a long history of opposition to the use of aversive procedures, such as electric shock, deprivation, seclusion, restraint, and isolation on people with I/DD and other disabilities. For many years now, The Arc has joined other organizations raising concerns about the health, safety, and welfare of residents of the JRC, including commenting on the rule that The Arc is now requesting the FDA to finalize.

The Arc Responds to Final Passage of the Farm Bill

Washington, DC – The Arc released the following statement following final passage of the 2018 Agriculture and Nutrition Act:

“We applaud the Senate and House of Representatives for their bipartisan work on the Farm Bill (H.R. 2), passed this week in the Senate by a vote of 87-13 and in the House by a vote of 369-47. We are pleased that the version of the bill that was passed rejects cuts to the Supplemental Nutrition Assistance Program, known as SNAP, which more than 11 million people with disabilities across the United States rely on to help them eat. Once signed into law, this bill will preserve access to basic food assistance for people across the country, including those with disabilities who rely on SNAP to put food on the table. We urge President Trump to sign this bill into law as soon as possible,” said Marty Ford, Senior Executive Office of Public Policy, The Arc.

Our Hearts Are Heavy: A Statement on the Tree of Life Synagogue Shooting

A statement from The Arc of Greater Pittsburgh, known as ACHIEVA, on the shooting at Tree of Life Synagogue this weekend. Two of their clients, Cecil and David Rosenthal were victims of the attack.

On behalf of the Board of Directors and Staff of The Arc, we offer our most heartfelt sympathy to the entire ACHIEVA family on the tragic loss of Cecil and David Rosenthal.

The ACHIEVA family is devastated at the loss of two well-respected members of our community. Two extraordinary men, brothers Cecil and David Rosenthal, were victims of the tragedy at the Tree of Life Synagogue.

Cecil and David had a love for life and for those around them. As long-standing recipients of ACHIEVA’s residential and employment services, they were as much a part of the ACHIEVA family as they were their beloved neighborhood of Squirrel Hill.

They loved life. They loved their community. They spent a lot of time at the Tree of Life, never missing a Saturday.  “If they were here they would tell you that is where they were supposed to be,” said Chris Schopf, Vice President, Residential Supports, ACHIEVA.

Chris added, “Cecil’s laugh was infectious. David was so kind and had such a gentle spirit. Together, they looked out for one another. They were inseparable. Most of all, they were kind, good people with a strong faith and respect for everyone around.”

Our collective hearts are heavy with sympathy to the Rosenthal family, and to all who were affected by the tragedy at Tree of Life.

The Arc Responds to Appointment of Judge Kavanaugh to the US Supreme Court

 

Today, The Arc responded to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. In August, The Arc came out in opposition to Judge Kavanaugh’s appointment to the highest court based on his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

The Arc has not publicly opposed a nominee to the Supreme Court in 30 years, since 1987 when Judge Robert Bork was nominated by President Ronald Reagan. When Judge Gorsuch was nominated to the highest court, The Arc did a thorough analysis of his record and decided to not oppose his appointment. The Arc solely takes positions based on the core values, mission statement, position statements, and public policy agenda for the organization.

“The Arc is disappointed in the Senate’s confirmation of Judge Kavanaugh, this is a devastating blow to disability and civil rights in our country. After a thorough analysis of Judge Kavanaugh’s record we chose to oppose his appointment and activate our grassroots network. Our organization was founded to promote and protect the human rights of people with intellectual and developmental disabilities. We couldn’t sit by idly knowing that Judge Kavanaugh has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“We believe Judge Kavanaugh’s appointment poses a threat to the civil rights of millions of individuals with intellectual and developmental disabilities and their families. It is shocking that so many Senators ignored the gaps in Judge Kavanaugh’s knowledge and understanding of the value and perspectives of people with intellectual disability. Even more disheartening is those Senators who ignored the pleas of their constituents with disabilities who called on them to oppose Judge Kavanaugh’s appointment. We appreciate those who stood up for their constituents, their support did not go unnoticed. We remain united with our colleagues across the disability and civil rights communities and will continue our advocacy to support the values we hold dear as an organization,” said Peter Berns, CEO of The Arc.

MediSked and The Arc Release the 2018 Disability Data Digest

Building on the joint 2015 I/DD Data Digest, MediSked and The Arc of the United States are proud to announce the release of the 2018 Disability Data Digest, a compilation of the latest statistics from the disability field, displayed in an easy to read infographic format.

In the age of information, it can be difficult to discern what data is reliable, relevant, timely, and accurate. This resource provides a snapshot of today’s disability community and highlights the areas in which progress has been made toward achieving parity in access to opportunity and basic human rights, while also delineating the many challenges that still face individuals with I/DD in striving for inclusion and equality.

The report includes detailed statistics about the following topic areas:

  • Population and Demographics
  • Socio-Economic Profile
  • Employment
  • Health
  • Housing
  • Independence and Decision-Making
  • Living in the Community
  • Long Term Supports and Services
  • Direct Support Professional Crisis
  • Family Caregiving and Natural Supports
  • Disability and the Justice System

We’ve included a fillable State & Local Advocacy Data Toolkit that is linked to resources and databases which contain state-specific data to support local-level advocacy campaigns. Additionally, we have made each of the individual infographics from the Data Digest available for use, with proper citations. You can utilize these resources to identify vital statistics in your state and community to fuel advocacy efforts.

Click here to download the 2018 Disability Data Digest.

The Arc Opposes Appointment of Judge Kavanaugh to the US Supreme Court

Today, The Arc came out in opposition to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. This opposition is based on Judge Kavanaugh’s record on cases relating to disability and civil rights.

Of particular concern are his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

“We did not take lightly the decision to oppose Judge Kavanaugh’s appointment to the US Supreme Court, but after a thorough analysis of his record, we cannot idly sit by knowing that he has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again. Judge Kavanaugh has written several troubling opinions and dissents on cases related to disability rights and The Arc’s constituents, including those pertaining to education, affordable health care, and self-determination.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“The Arc urges Senators to not confirm Judge Kavanaugh’s nomination to our highest court. The Senate should not confirm a Justice to the Supreme Court whose judicial philosophy threatens the autonomy and well-being of people with intellectual and developmental disabilities,” said Peter V. Berns, Chief Executive Officer of The Arc.

The Arc Condemns Family Separations at U.S.-Mexico Border; Calls on Congress to Act

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border.

“The Arc stands with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc. “The notion of uniformed, federal border protection agents forcibly separating parents from their children is outrageous. Family separations are extremely traumatizing and damaging to children, and none are more affected than children with disabilities, who rely on their loved ones for care, security, and support.”

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc’s Berns further noted: “The Arc condemns the cruel and inhumane immigration practices which the Trump Administration has stated are being carried out in accordance with existing immigration policies and laws. However, this explanation rings hollow. Nothing in the law requires the children to be ripped away from their families. This is, quite simply, a choice that has been made by the Administration which is both punitive and contrary to basic human decency.

“How many children have already had the protection, security, and love of their parents stripped away, and how many more face the same fate? As a nation founded by immigrants, we and our elected representatives at the state and federal levels should be outraged by this practice. We call upon President Trump to immediately halt these cruel practices, and we call upon Congress to take action to ensure that such Administrative practices are permanently prohibited.”

The Arc Responds to Texas Court of Criminal Appeals Ruling in Bobby Moore Case

Washington, DC – Earlier this week, the Texas Court of Criminal Appeals (CCA) ruled that Bobby Moore did not have intellectual disability and could, therefore, be executed in Texas. The 5-3 CCA decision ignored the request of State prosecutors who—in light of last year’s U.S. Supreme Court ruling in Moore v. Texas—urged the CCA to find that Mr. Moore did meet the criteria for intellectual disability and should therefore have his sentence commuted to life in prison rather than be subject to the death penalty in violation of the Eighth Amendment to the U.S. Constitution prohibiting cruel and unusual punishment. 

“The facts in this case are clear—so much so that prosecutors acknowledged that Mr. Moore met the criteria for intellectual disability following the Supreme Court’s decision—and Mr. Moore should therefore be protected by Supreme Court decisions that ban the execution of persons with intellectual disability as cruel and unusual punishment under the Eighth Amendment.  The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our legal advocacy efforts to ensure that the Supreme Court’s decisions are upheld and justice is appropriately served,” said Peter Berns, CEO of The Arc.

Last year, the U.S. Supreme Court vacated the CCA’s prior decision finding that Mr. Moore did not meet the criteria for intellectual disability and could be executed based on its use of stereotypical and outdated factors—instead of well-established clinical standards—to determine intellectual disability in death penalty cases. Judge Elsa Alcala who authored the CCA’s dissenting opinion this week, issued a strong rebuke to the majority: “this Court has set forth an unconstitutional standard for intellectual disability that continues to permit consideration of wholly subjective, non-clinical factors and stereotypes…This Court’s approach…is eerily reminiscent of the seven Briseno factors that were held to be unconstitutional by the Supreme Court.”

The Arc of the United States and The Arc of Texas filed an amicus brief with the CCA in support of Mr. Moore, joining a broad range of prominent entities and individuals with diverse perspectives and views on the death penalty who filed briefs urging the CCA to grant relief for Mr. Moore. The Arc’s amicus brief noted that the framework established by the Supreme Court requiring courts to consult clinical standards in making intellectual disability determinations in death penalty cases laid a sound foundation for the CCA to determine that Mr. Moore meets the criteria for intellectual disability and cannot be executed.

In her dissent, Judge Alcala cited The Arc’s amicus brief, noting that it “correctly observe[s] that ‘there is a wide gap between the clinical definition and expectations that many laypeople have about intellectual disability…these ‘common misimpressions include beliefs that people with intellectual disability are essentially identical to one another and that all are incapable of any but the most rudimentary tasks.’”

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. Most recently, in Moore v. Texas (2017), the Court rejected Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.”
The Arc has deep sympathy for the family and friends of the victim in this case, and we supported appropriate punishment of all responsible parties. The Arc did not seek to eliminate punishment of Mr. Moore or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Stage is Set for the Next Threats to the Civil Rights of People with Disabilities with President Trump’s Latest Executive Order

Washington, DC – The Arc released the following statement in response to the Trump Administration’s “Executive Order on Economic Mobility”:

“Over the last year, people with disabilities, their families, and other advocates have fought again and again against overt attacks on access to health care and supports and services that make life in the community possible.

“After failing to decimate Medicaid, this Administration announced this week that it intends to open up a new front in this effort – one that aims right at those most in need, the poorest in our country, who have the most to lose.

“If you read between the lines of this executive order, it is a blueprint for sweeping changes that penalize people who are unemployed, across multiple programs. From Medicaid, to housing, to food assistance and other programs – this will result in new barriers to eligibility and denial of critical services. The call for increased economic opportunity is not backed up with provision of tools for individuals to succeed.

“We fundamentally disagree with the notion in here that some eligible people are more ‘deserving’ of benefits than others. This is also part of a pattern. From an Administration budget request that would have been devastating to people with disabilities, to a state by state effort to cut people off Medicaid, to a tax law that jeopardizes critical programs, we are still in the fight of our lives and remain ready to advocate for the civil rights of people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.
The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Joins Effort Calling on Department of Education to Keep Guidance on Treating All Students Fairly, including Students with Disabilities

The Arc has joined more than 140 national, state, and local organizations, led by The Leadership Conference on Civil and Human Rights, in a letter calling on the U.S. Department of Education (ED) to keep in place school discipline guidance.  This guidance merely clarifies that the ED expects that schools and districts are treating all children fairly and provides practical tools and guidelines for educators to create safe, supportive, and welcoming environments for all students.

In 2014, the federal guidance was issued with documents that provide important information and support for educators who want to create safer and more welcoming schools and important cautions for schools where problems of unequal treatment are not being addressed. The Arc and the organizations signing this letter maintain that rescinding the guidance would send the opposite message: that the ED does not care that schools are discriminating against children of color by disproportionately removing them from school and that ED does not see itself as having a role in helping educators create and maintain safe schools that afford all students equal educational opportunities.

“We know that suspensions and expulsions have been used for far too long and too often in our schools and are used disproportionately against children of color and children with disabilities. This federal guidance helps to stop this trend, and rescinding it would harm the progress we have to make to live up to our commitment to a free and appropriate public education for minority students with disabilities,” said Peter Berns, CEO, The Arc.